Routines

Some might say that routines make the world go 'round.  Not me.  Nope, I say that routines keep the world stable and firmly in place.  My lad is a huge fan of routines and plans.  He always has a plan, and if he can't set the plan he needs to know what the plan is going to be.  Start to finish... if I could tell him when all pee breaks were intended to take place I'm sure that would only raise my plan/routine plotting to a whole new delightful level for him.

Today saw a routine change, and it was not well received.  Mitul is traveling for business, and mornings are his thing.  These two boys have their routine and it runs smoothly.  I don't stick my face in it; except for when there is travel involved.  So today my face was all there.

First, I kiboshed the TV watching and asked him to read a book while I made his breakfast.  This was a hard sell, but he did give in after much debate and worry.  During the breakfast consumption he let me know that he thought it was better when I followed Daddy's routine.  And I calmly explained that when I do mornings with him, I have to get us both ready and that I would make some changes to help that happen.  Things were going fine, time was ticking down, and then I asked him to put on his socks and shoes.  O. M. G.  This was clearly a huge error.... there were many questions and then his hands started moving.... and his shook quickly side to side.  And he panicked and asked if we were leaving now, or something?? I tried to explain that it would just be easier, but to no avail...the hand moving, head shaking, and bargaining, confusing got louder and louder.  Then it happened.  I shouted at him to put on his socks at least!  And that little head stopped moving.  He looked at me with huge eyes and the corners of his mouth down turned, and he shouted back 'I just want to understand why'.  I felt like a real jerk.  Shouting at my lad never helps, it just raises his anxiety.  Not my best moment... but I'll tell you what, he put on his socks.

It's been such a long time!

4 1/2 years... almost to the day.  Hard to believe so much time has passed without a single blog post.  Maybe that seems like I'd forgotten all about the perils of preemie life; but in actuality my information shifted from blogging to Facebook.  My Mum made a page dedicated to our March of Dimes team, and a lot of what was happening in my life resides on her personal page.  But now, it's time to hand over the reins of this blog.  So let me present to you: Mum.  

Hi... this is Mum.  Tammy Shah, stay at home Mum, protector of said preemie, self professed advocate extraordinaire.  It is I who wrote this blog for those first years, and I told the story through Ethan's eyes because it made sense to me.  But now? Well he has his own voice, and it's loud,  He doesn't need me to blog his life through his eyes anymore, but I find that I need to blog his life through mine.  

So much has happened in these 4 1/2 years.  So many joys!  So many achievements!  So much frustration.... changes, maturing, back steps, diagnosis.  So much.  Let's start with the good which is that Ethan is healthy and happy!  He is a thriving 9 1/2 year old who stands a massive 4'9" tall and weighs in at about 110 lbs.  He's come so far from those tiny beginnings.  He's a polite kiddo who I'm always happy to take places and to allow him to visit with his friends.  I think we're doing this parenting thing alright.  I always feel blessed to be his Mum.  ALWAYS.  

Today I was shopping for Easter... books.  The child loves to read, so I was shopping books.  I made my choices, I was happy about them and then I passed the section that I most avoid since this past fall.  Fall was when the official Autism diagnosis came in.  Fall was when it became real.  Fall was when I started avoiding this section of the store.  It was Fall.  I borrowed a book from a wonderful supportive friend and I have skimmed it many times.  I read some here and there.  

It has struck me.  I am a strong woman!  I have lived through a lot and I'm secure walking in my shoes.  But just today...looking at those books...I thought, am I strong enough for Autism?  Ethan is, I know he is.  He won't know any different and he will go about his life with his self professed advocate extraordinaire at his side.   But when I try to pick a book, I feel tears prick my ears.  I skim them and hone in on the word 'toddler'.  My boy isn't a toddler, not even close.  And I'm angry with myself for not paying better attention, for not doing the testing sooner.  I'm mad at myself for having to navigate this at 9 instead of 7 or 5 or 3.  The days march on and we haven't even talked with him yet about his diagnosis.  I can't figure out the right time!  Is Friday evening best so we can field questions through out the weekend??  Maybe Saturday AM over pancakes at iHop??  When?  When do I confirm what he already feels, that he is a little different from the other kids in his class.  Not bad different...just different.  I think people may be rolling their eyes now, so hear me out.  I have watched Ethan struggle since before he was even born.  Those 5 weeks without any amniotic fluid to help him learn vital skills, those first days after birth when he was clinging to life, those 104 days in the NICU.  Then how he struggled to learn how to move his body, to roll over at 15 months, crawl at 18, walk at 24.  I was by his side the whole way transitioning from Early Intervention to preschool, and coping with the CP diagnosis.  I witnessed his sadness when other kids are so much faster than him, and how each year there is some kid who bullies him.  So Autism, to me, is just another thing he has to struggle with.  And today...while I was shopping, I could only sigh and think to myself that it's just not fair.  

But tomorrow is a new day.  

DEERFIELD FAIR 2010

I went to the Deerfield Fair last year... I spent a LOT of time looking at the John Deere tractors, and NO time riding rides. I wasn't even all the excited to look around - but I did like ice cream.

This year... I still liked ice cream (vanilla with rainbow sprinkles), and I still sat on the John Deere tractors:

And I was a little more tolerant of walking around (or riding in my nifty wagon) but the BEST part this year?? THE RIDES -- YEAH~! I LOVE rides now. Mum says I'm a thrill seeker. I wanted to go on this HUGE viking ship ride, but I was too small. Nonetheless the one they had for the kids was NOT good enough for me. I'll just wait until I grow - thank you very much! But I did go on loads of rides!

There were more! I wanted to ride EVERYTHING. It was fun - I cannot wait for next year when I am HUGE!

The Things He Says October 2010

While checking out his lighted plastic pumpkin:

Ethan: When it's dark in my room we can put this pumpkin on and my turtle. Those are sweet lights to have on in the dark when you want to play. Tammy: Ethan, did you just say those are sweet lights?? E: Yeeah they ARE sweet lights, and we can put them on and play when my room is dark, is that cool?

Using a little iPod and headphones:

Ethan: I am listening to the 'Carl Goes Up' music a bunch of times. That makes me happy. Mummy: Then I'm happy too, Ethan. Ethan: Yeah, I can click on the letters all I want TOO.

September 2010 Ethanisms...

Ethan: Mommy, Look at me! Mommy: Ethan, what's that all around your mouth? E: It's lip balm! Now I look pretty AND cool!

(After seeing the movie Despicable Me)

Daddy: Ethan, you need to take your trousers off now, please. Ethan: Daddy.... you're being 'spicable to me!

Mommy: Ethan are you going to watch your show, or can I change it to something else? Ethan: I am going to watch it. Watch it and play.... is that cool?

While checking out Daddy's 5 0'clock shadow: Daddy these feel like crispies. Can you get rid of them?

Regarding dinner one night: Mitul, Ethan come to dinner. E: Daddy what am I having? M: Mummy made pot roast, potatoes and carrots. E: NO, Mummy said I could have Macaroni and Cheese! Tammy: Ethan, that was for lunch. E: NO, but Mummy you said I could have Macaroni and Cheese or pizza. T: Ethan... really, that was for lunch. M: What did you have for lunch, Ethan? E: Pizza. M: OK then - we're having pot roast, potatoes and carrots for dinner. E: No I can't, that is not tasty for me!

At bed time: Ethan: Mummy can you read with me? Tammy: Yes, but you need to pick up your toys first. Look here's your Audi right here. E: But Mummy... T: Audi! E: But... T: AUDI E: OK, OK calm down.

Ethan: Bruin, sit! Bruin sits... E: Thank you (pats Bruin's head) you're a good little fella

After I cleaned a DVD that was skipping: Ethan: Thank you, Mummy. It's working just fine now. (awwwww....LOVE him!)

Slime is the word!

Mum says that it's not unlike when Grease was the word. I don't understand at all what she means, but she keeps giggling every time she says it. What a silly Mummy!

We've had a busy week, and it's been loads of fun! We went down to CT again this time for Seb's birthday party. He turned 5, just like me. We're big boys!! It was a Ghost Busters party, and I had a really great time playing in the dirt and banging on some drums that were in their front room! I need drums now.... Mum and Dad say that's fine with them. I love that they're cool like that. Cool... that's my new word now, I use it often.

Today after school Mum and I did bunches of nifty stuff. We learned about money - Quarters, Dimes, Nickels, and Pennies; I learned how much each one was worth and then I got to sort them and put them into my banks. Then we did some writing I traced the whole alphabet without giving Mum any problems until I got down to my name... what can I say? We also did some mazes, and I got to trace thru them... I like to hurry scurry and just get right to the end, but Mum says I need to 'try' to stay inside of the little path... what's the fun in that???? AND we played with SLIME!

I got the smile at Seb's party, it was in my goody bag and it looked like it could be plenty of fun so Mum and I gave it a whirl today. I think maybe we need more of this slime stuff... see what I meean:

Yeah... definitely need more slime....

Apple Picking with Auntie Michelle & Lexi

OK, so I totally love my Auntie Michelle and Lexi. In fact there isn't much I wouldn't do for Lexi - I love her THAT much. Today we all went apple picking and we had a really great time. There was this great hay bale maze, and Lexi and I went through it and then we walked on the top of it together. It was so much fun...until I wasn't looking where I was going and I stepped off the maze! Yeah...I know. I didn't get hurt, and since I'm so big (and 5) now, I just shook it off and gave it another try... this time with my Mum, and Lexi.

So we went to:

And here is my action on the hay bale maze:





And I wanted to 'ride' on the little tractors. Those who truly know me understand that to mean I really just wanted to sit on it. ;-)




THEN we picked the apples. At first I wasn't really into it...I just wanted to wander around. But then I got a handle on the whole thing and I had a great time!






Apple 'cheers' with Lex!



And finally explaining my 'little wrinkly apple' to Auntie Michelle!